Rupa Gandharva lives in Dang district with her four children who have different types of disabilities. She has twin girls Ganga and Jamuna , who are five years old, a son Ganesh who is 13 and a daughter Manisha who is eight. They have been staying in Dang for the past five years.
So how did she end up there with her children? Rupa and Dil Bahadur Gandharva – were a young couple from Garayala VDC in Rukum District in Midwestern Nepal, which remains remote and largely unexplored. Trying to have a normal child after losing their four children or having a child with a disability several times, Rupa had delivered for the tenth time. A child with a disability is considered very unfortunate and a result of Karma or past sins especially in rural, low- literacy and low income populations of Nepal.
Declared visually impaired within three days of his birth Ganesh, born in 2004 was the fifth child of the couple. Rupa sadly explained how she was taunted by her family members and the community for not being able to have a normal child or losing her child every time at birth. Women are often stigmatized when this happens.
Distraught and still wanting a normal child Rupa and Dil Bahadur tried for a child a sixth and seventh time. Unfortunately both the children passed away within a day of birth. Not giving up they tried for the eighth time. This time it was a girl-Manisha. She seemed to be normal when born but when they got her examined by the doctor after five days, she was declared visually impaired. Other than that she was fine until the first six months. However after that she developed swellings on her neck and various parts of the body and had problems with digesting her food.
The couple tried everything from religious offerings to ceremonies and rituals-a common practice in rural communities- in the hope that she would get better. Unfortunately nothing helped and her condition deteriorated further. A cleft palate (birth defect when a baby has a gap in the roof of the mouth) made it impossible for her to bring out any speech sound. Asian countries are known to have one of the highest cases of oral clefting compared to European and African countries.
Although quite frustrated, the couple were still determined to have a normal child and tried once again. This time they had twin girls Ganga and Jamuna who were also visually impaired (totally). So Ganesh and his three sisters were all visually impaired, with the three girls having additional disabilities while the six children who were born normal did not survive. One of the reasons behind this could be the fact that Rupa was Dil Bahadur Gandharva’s uncle’s daughter. It is well known that marriage between cousins doubles the risk of having babies with birth defects and can sometimes be life threatening too.
Rupa actually believed that her four children were visually impaired because the Gods were angry with her as her family (parents) had not performed some essential ritual. There are several beliefs and superstitions like these that are prevalent in the society. Fate or possessions of bad spirits are believed to be the cause of disability. One of the other reasons for all these rituals could be that she was sure her husband would take on another wife(not uncommon in the country) if she did not have a normal child and was only desperately looking for ways to prevent that. Sadly nothing helped and it was extremely painful for Rupa when her husband got married to another woman. His second wife had three normal children.
They say it gets worse before it gets better. The situation did get better eventually for Rupa. One day she came in contact with journalist Laxman KC from Kathmandu. He helped take Rupa and her four children to Dang. She was taken from Rukum to Dang and then to Nepalgunj and Kathmandu by flight by the journalist. She mentioned this proudly as it was the first time that she and her children were flying in an aircraft. She was then guided to take her children to Tilganga Eye Hospital for eye examination where she was informed that there was no medical cure for their blindness. Another journalist Prahlad got Rupa and her four children interviewed on Nepal Television by the anchor Narayan Puri so that people would hear her story.
Following this, Rupa and her children were referred to Maiti Nepal- an NGO helping destitute women, by Prahlad and taken under its wings around the time her youngest children- the twin girls were five months old. She claims, “The founder Anuradha Koirala was very nice to me. But the helpers (Aiyahs) there were mean to me”. She did not feel like staying there and left the place and returned to Dang with the help of journalist Laxman KC. The journalists even got her in touch with Himalaya TV when she was in Kathmandu. The TV Channel y is sending her NPR 7000 a month on which she is surviving.
When Ganesh joined Sri Guru Jajur Higher Secondary School in Dang, Rupa was allowed to stay at the Hostel of this school with him. He is now studying in Class III. The resource teacher Bishnu Neupane at Ganesh’s school and Shaligram Gautam at Rapti Eye Hospital referred her to BPEF-CHEERS. This was how she landed there with her three daughters Manisha, Ganga and Jamuna in November 2016.
Manisha who is also visually impaired (totally) has physical and other developmental growth delays as well. She has Chorea (an involuntary movement disorder) with no speech and language development except for random and jarring sounds she brings out which are also unclear. Initially when she came to the Centre, she was also unable to sleep in the night and slept throughout the day. The reason being her mother locked her up and went to work during the day. This is what most parents of children with disabilities do especially in rural areas when they have to go to about doing their work. Being visually impaired this naturally became her routine.
After following a routine in the company of other children with disabilities at the Enabling Centre of BPEF-CHEERS, this habit changed in two weeks. She has gone home for some time but will come back soon and resume her training. Hopefully she will be able to gain more confidence and do some of her daily living activities so that she is a little more self reliant.
After her children were admitted to the Enabling Centre at BPEF-CHEERS, Rupa was present with them for six days, the first three days for the teachers to observe and get updated about their activities and behavior and then another three days for her to get orientation training on how to teach her children. The twins were very shy in speaking up and could not perform activities of daily living like brushing their teeth and changing their clothes. Rupa received counseling from Prashikshya Bhattarai, the Psychosocial counsellor at the Enabling Centre which made her feel very positive about her daughters’ future knowing that there would be change in them after the training provided at the Centre. After six days an action plan was chalked out for their training according to their needs.
Ganga and Jamuna had different challenges. Jamuna had problems with tactile skills which needed a lot of development. It was quite a challenging task to get her ready to graduate. Ganga had difficulties with speech, emotional development, tactile and social skills which was even more difficult for the teachers. Luckily they made good progress and were trained and ready to graduate in four months on 29 March 2017.
The two girls were sent for admission to Mangal Prasad Secondary School in Surkhet along with the recommendation of the Department of Education. They are now studying at Sri Guru Jajur Higher Secondary School in Dang. Although they are twins, they think very differently. Ganga wants to become an ophthalmologist while Jamuna wants to be a teacher. Regardless of the fact that they cannot see, it is encouraging to see that they have dreams about the future like any other normal child.
Even though Rupa went through a lot she did not lose hope and single handedly managed to take care of her children. Her determination and care helped them nurture dreams for the future. Taking care of four children with disabilities is a daunting task-especially when you do not have your husband or family’s support, are not educated, and fall in the low income bracket. Hats off to her!